Scientific Advisory Board (SAB)

The scientific advisory board will ensure a high standard of research and monitor the progress of the project by taking part in the annual General Assembly Meetings. Whenever appropriate, it will consult the consortium and make recommendations as to improve their performance.

Members

Prof. Dr. Mohamed R. Daha received his Ph.D. degree in 1973 at the University of Leiden, following a three year post doctoral training at the Harvard Medical School in the field of Immunological Mediators of Inflam-mation, with specific attention for complement. He returned to Leiden University to head the research of the departments of Nephrology and Rheumatology at the Leiden University Medical Center and was appointed to full Professor in Immunology in 1987. His main fields of scientific interest are immunology of inflammation with specific interest in kidney and complement associated diseases. He is strongly involved in the tutoring of medical- and biomedical students and is still responsible for the scientific education of medical students. Prof. Mohamed R Daha is a member of the several societies (e.g. American Association for Immunology, British Society for Immunology, The International Society for Nephrology). At the advisory levels he has served in several scientific advisory boards (e.g. Dutch Asthma Foundation, Dutch Rheumatology Foundation, Dutch Kidney Foundation). At present he is member of the council of the international complement society (ICS) and of the European Complement Network. Since 2010 Mohamed R. Daha is emeritus professor at the Leiden University and has a part time professorship at the University in Groningen. Further he is honorary professor at the university of Nanjing and guest professor at the University of Sao Paulo.

Dr. Bernd Mayer, emergentec biodevelopment GmbH, Vienna, has specialized in large scale data integration in translational clinical research aimed at biomarker/target discovery and evaluation specifically in the realm of stratified medicine. Bernd will provide advice on EurenOmics molecular/clinical data management, integration and analysis for helping to build on the promises of Systems Biology concepts brought into clinical research. Bernd is further involved in a number of EU projects (among them coordinating SysKid, www.syskid.eu), and will support synergistic activities on chronic kidney disease R&D on a European level.

Dr. Norman Rosenblum trained in Pediatrics and Pediatric Nephrology at the Children’s Hospital, Boston and in cell and molecular biology at Harvard Medical School. Since joining the University of Toronto in 1993, his lab has defined molecular mechanisms that control formation of the normal and malformed kidney. Dr. Rosenblum’s research has been recognized with the 2004 Aventis Pasteur Research Award, the 2006 American Pediatric Society Norman J. Siegel New Member Outstanding Science Award, and the 2011 Kidney Foundation of Canada Medal for Research Excellence.

Prof. Bernard Rossier, former Director of the Department of Pharmacology and Toxicology and former Dean of the Faculty of Biology and Medicine of Lausanne University, recipient of many international Prizes in the field of nephrology, member of EMBO, Academia Europaea, Akademie der Naturforscher Leopoldina, Foreign Honorary member of the American Academy of Arts and Sciences, Dr. honoris causa of the University Pierre et Marie Curie in Paris, and member of the Louis Jeantet, Leenaards and Cloetta Foundations. Prof. Rossier has outstanding expertise in the field of tubular electrolyte handling in health and disease.

Prof. John Sedor, MetroHealth Research Endowment Professor at Case Western Reserve University, Cleveland, Ohio. Dr. Sedor is an expert in nephropathy susceptibility genes and experimental research into the mechanisms of kidney disease progression. Dr. Sedor is a member of the Steering Committee for the NIH-funded, Family Investigation of Nephropathy and Diabetes, a consortium to identify variants that regulate diabetic nephropathy, and chairs the Steering Committee of the Nephrotic Syndrome Study Network (NEPTUNE), a consortium using systems biology tools to conduct clinical and translational research in patients with idiopathic nephrotic syndrome. His lab is focused on characterizing the biology underlying associations between genetic variants and chronic kidney diseases.

Please let me introduce myself to you.

I am a mother of 3 children of respectively 15, 11 and 10 years old. My eldest child is suffering from a rare disease called Nephrotic Syndrome, which he got at the age of 2.

In order to create a better future for my child and other children and patients, I have -since about 13 years- committed myself to voluntary work in the field of Nephrotic Syndrome.

From 2001 until 2010, I have been a volunteer in and Chair of the Dutch Board for Nephrotic  Syndrome of The Dutch Kidney Patient Organization.  In addition, I am the official representative in the Dutch WINS, Working-group of the Dutch Academic Hospitals for Idiopathic Nephrotic Syndrome. Furthermore, I have worked together with the AMC/Emma Childrens Hospital In Amsterdam by giving input from the patient's point of view for a report that was presented to the Dutch Kidney Foundation called Restructurization of Dutch Health Care for Children with a Nephrotic Syndrome and more recently in the development and initiation of the parent-part of the European Registry for Children with a complicated Nephrotic Syndrome. I have reviewed from the patient’s perspective various research projects that have been and are to be developed especially for this disease for the coming period.

In  January 2006, I started the development of a multinational alliance for Nephrotic Syndrome which in January 2010 lead to the founding of NephcEurope Foundation. This is an international patient-consortium consisting of independent national patient-organizations from various European countries that work together for the improvement of health-care  for patients and for further intensification of research for Nephrotic Syndrome. NephcEurope Foundation has a broad network of medical specialists, researchers and other stakeholders and works closely with ESPN-WINS, the international working- group of Pediatric Nephrologists in the field of Nephrotic Syndrome. NephcEurope is a member of the umbrella patient-organization group of Eurordis, the European Rare Diseases Patient Organization.  In 2013 NephcEurope will start up privately funded projects, monitor and coach two international research teams and their studies with regard to Nephrotic Syndrome.

Three years ago, I decided  to switch my career from the commercial field where I was engaged in International Sales, Project Management and Coordination to the health care environment.

Before I came to work for my present employer, Eurotransplant, I was employed as a Policy Officer for Rare Diseases taking care of the development of Standards of Care for a.o. oncogenetic diseases and Nephrotic Syndrome. Since November 16th 2011, I am employed as International Coordinator  of the Organtransplantation Registries with Eurotransplant in Leiden, The Netherlands.  I am responsible for the development and implementation of all Organ Transplantation Follow Up Registries and a partner in several European projects.

I am really looking forward to working with you all on this incredible EURenOmics project!

Marieke van Meel